Westmoreland group helps families understand Tourette disorder
When her 5-year-old son was diagnosed with Type I diabetes, Connie Molek anticipated a schedule filled with doctor's appointments and medications.
She had no idea that Joey soon would be diagnosed with attention deficit disorder and obsessive-compulsive disorder, as well. Or that a support group for families dealing with Tourette syndrome might one day help her to understand the challenges facing her son.
"When he was about 7 years old, my sister noticed his behaviors after she had spent a day with him, and she suggested I get him checked for Tourette," Molek said. "With the noises and the body movements, I knew there was more to it. I knew he was more than just an ornery kid."
Molek, of Redstone Township in Fayette County, immediately made an appointment with a neurologist at Children's Hospital of Pittsburgh.
There, she and Joey's father, Gary, finally found some answers: The boy's difficult behavior and unusual motions could be attributed to Tourette syndrome.
Joey's diabetes is unrelated to the condition, but Tourette often is associated with both ADD and OCD. It's a neurological disorder that usually is detected in children between ages 2 and 15. The National Institute of Mental Health estimates that between one and 10 in every 1,000 children and adolescents is affected.
According to the Tourette Syndrome Association, the first symptoms generally include involuntary movements or sounds known as "tics." All patients with Tourette have involuntary motor tics, usually occurring in the face, arms, limbs or trunk. Some also have verbal tics such as barking, throat-clearing, shouting or grunting. In some cases, the sounds take the form of obscene or repetitive language.
Research indicates that Tourette may be caused by "abnormal signaling between various brain circuits," the NIMH reports, and studies are under way to try to pinpoint the cause. It often is treated by a neurologist, who may prescribe medication to control the disruptive behavior.
When Joey was diagnosed, his mother knew almost nothing about the condition.
"It was hard to see your son do all these difficult things that you don't always understand," said Molek, whose son is now 13 and a seventh-grader at Brownsville Middle School. "I knew I needed help from the support group. Sometimes you need to tell your story and have someone listen. I wouldn't have made it to this point without them."
Vickie Luehm, of North Huntingdon Township, knew exactly what Molek was going through. Her son Ryan, now 31, also was diagnosed at age 7 with Tourette.
When Luehm and her husband, Dave, first learned that their son had Tourette, they turned for help to the Pennsylvania chapter of the Tourette Syndrome Association, a nonprofit group based in Bayside, N.Y. Vickie Luehm ultimately headed up a support group in Westmoreland County.
Although she is still active with the group, Luehm has handed the coordinator's duties to Cheryl Walker, of Export, who also has a son with Tourette. Joshua, now 18, was diagnosed when he was 9.
"People were blaming me, my husband, our parenting skills," said Walker. "Some people mourn when they get the diagnosis, but for me it was a blessing to find out, because it was finally explaining why my child was the way he was. I finally had something that I could research and do something about."
Park of Walker's "research" involved attending the support group, where she heard other families share their stories.
"Some people come just for the info, but they don't need the camaraderie, and that's great," Walker said. "But I needed to come in and hear people talk about what they were going through and know that I wasn't alone, and that I wasn't the only person in the world that was going through this."
Luehm said support group families may come and go, seeking information and aid at difficult times during a Tourette patient's life.
"People need you when the child is first diagnosed. They are upset and scared and they don't know what to expect. They need information," Luehm said. "As soon as they are comfortable with the information, they go. That means we've done our job. We've given them the ammunition to continue."
Families who come to meetings also may be looking for solutions -- practical ways of dealing with day-to-day life when a child has Tourette, Walker added.
"Nothing is consistent, not even the tics themselves," she said. "One day it could be facial grimacing, the next day swinging arms out. In a school situation, if your child is throwing his arms around and hits another kid, it's a problem.
"It's just a lot of diplomacy and a lot of trying to make other people understand about your child."
When a child has Tourette, Walker said, ordinary activities take extra time and planning.
"It's those things that other people don't even have to think about," she said. "Like calling ahead for dental appointments and explaining that while taking X-rays, he may move his head, and he can't help it. Or whenever we go get his allergy shots: If we are in the waiting room and he is doing his natural tic-ing, know that people are looking at him makes him tic more. So I am sitting with a child who knows what is going on, and I have to decide whether I want to say something or not."
Molek describes her son as an "ordinary kid" who enjoys sports, collecting cards and playing games with his sister, Abby, 8.
With the support group's help, Molek has learned to deal with the challenges associated with Joey's condition.
"Church on Sunday is a tough time for Joey. I think he feels like he has to suppress his tics, and that makes him more uncomfortable," Molek said.
"His tic is a loud, quick yell that sounds like an 'ah.' It's loud and it startles you. At first, every time I heard it, I just wanted to cry. But I have learned to just give him a little smile and a touch and let him know it's OK."
School is a big part of any child's life, and Luehm said some school districts handle the condition better than others. Still, an increased awareness of the disease is starting to change the way school officials respond to students with Tourette.
"Even though the kids can't help it, some of the tics are inappropriate for a school setting, so it's a lot of compromise between the school and the kids," Luehm explained. "More and more teachers are learning about it in their college (studies), and the medical students are learning about it while they are in school. Nursing programs will get education about Tourette as well."
Most children with Tourette attend regular classes, so the Tourette Syndrome Association has speakers who can talk to students and teachers about the condition.
Walker said it's important to remember that people with Tourette typically go on to live happy, normal lives. Her son graduated from high school and is now a student at Westmoreland County Community College, where he's studying culinary arts.
Molek hopes the behavior problems her son faces will subside someday. Although Tourette is a chronic condition, symptoms often peak in the early teen years, then decrease in the late teens and early 20s.
Although Joey is a bright and capable student, Molek said her biggest challenge now is getting him to complete his school work.
"I hope at some point he realizes how important everything is and how important it is to take care of himself," Molek said. "He has accepted it. He continues to go through life without (Tourette) getting in his way. At this point, he hasn't let it stop him at all.
"He's never asked, 'Why me?' He deals with it the best he can. I am very proud of him for that."
The Westmoreland County Tourette Syndrome Support Group meets on the second Monday of each month at Family Behavioral Resources, 8960 Hill Drive (behind Norwin Hills Shopping Center), North Huntingdon Township. For information, contact Cheryl Walker at 724-327-0651 or via e-mail at email@example.com ; or Vicki Luehm at 724-863-3163 or via e-mail at firstname.lastname@example.org .